ID

37823

Beschreibung

ICHOM Atrial Fibrillation data collection Version 1.0.0 Published: 3rd April 2019 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ The following conditions and treatment approaches (or interventions) are covered by our Standard Set. Conditions: Atrial Fibrillation Population: An adult (≥ 18 years) diagnosed with atrial fibrillation (including symptomatic patients) Treatment approaches: Management of cardiovascular risk factors and institution of preventive therapy | Pharmacological management| Non-Pharmacological management Excluded populations: Children and Young persons below 18 years Excluded conditions: Patients diagnosed with cardiotoxic acute atrial fibrillation This document contains the Follow-up - Patient-reported Form. It has to be filled in after 6 months and 6-monthly from then on. Collecting Patient-Reported Outcome Measure: PROMIS Global Health. As there is an official distribution site, the questions of this questionnaire will not be included in this version of the standard set. For more information see: https://bit.ly/29aOZu9 Montreal Cognitive Assessment Test. For more information see: https://www.mocatest.org/ The Standard set of ICHOM was supported by the BigData@Heart organization.

Link

http://www.ichom.org/

Stichworte

  1. 21.08.19 21.08.19 -
  2. 26.08.19 26.08.19 - Sarah Riepenhausen
  3. 30.04.20 30.04.20 - Sarah Riepenhausen
Rechteinhaber

ICHOM

Hochgeladen am

26. August 2019

DOI

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Lizenz

Creative Commons BY-NC 3.0

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ICHOM Atrial Fibrillation

Follow-up - Patient-reported

Administrative Data
Beschreibung

Administrative Data

Alias
UMLS CUI-1
C1320722
Indicate the patient's medical record number
Beschreibung

This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution INCLUSION CRITERIA: All patients TIMING: On all forms REPORTING SOURCE: Administrative or clinical RESPONSE OPTIONS: According to institution

Datentyp

text

Alias
UMLS CUI [1]
C1269815
Time Relative to Baseline
Beschreibung

This Item does not exist in the original standard set, instead it is asked to do the following: Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_AT (After treatment); VARIABLEID_AS (After surgery); VARIABLEID_UPDATE (Update at least annually), etc.

Datentyp

text

Alias
UMLS CUI [1,1]
C0439564
UMLS CUI [1,2]
C1442488
Lifestyle interventions measured
Beschreibung

Lifestyle interventions measured

Alias
UMLS CUI-1
C0023676
UMLS CUI-2
C0184661
Indicate your (the patient’s) category
Beschreibung

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient-reported Type: Single answer

Datentyp

integer

Alias
UMLS CUI [1,1]
C1519386
UMLS CUI [1,2]
C0683312
How many standard alcoholic drinks do you drink per week?
Beschreibung

Supporting Definition: Standard drink according to WHO is 10 grams of pure alcohol that is: - A can or bottle of beer (375ml or 12 oz at 3.5% alcohol by volume) - A small glass of red wine (100ml or 3.4 oz at 13% alcohol by volume) - A shot of whiskey or other spirit (30ml or 1.0 oz at 40% alcohol by volume) Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient Type: Single answer

Datentyp

integer

Alias
UMLS CUI [1]
C0560579
On average, how many days per week do you engage in moderate to strenuous exercise (like a brisk walk, slow biking, general gardening)?
Beschreibung

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient Type: Numerical value Response Options: Numerical value of days per week

Datentyp

integer

Maßeinheiten
  • days per week
Alias
UMLS CUI [1,1]
C1513375
UMLS CUI [1,2]
C0677547
UMLS CUI [2,1]
C1514989
UMLS CUI [2,2]
C0677547
days per week
On average, how many minutes do you engage in exercise at this level?
Beschreibung

Inclusion Criteria: All patients Timing: Baseline, Annually Data Source: Patient Type: Numerical value Response Options: Numerical value of minutes per week

Datentyp

integer

Maßeinheiten
  • minutes per week
Alias
UMLS CUI [1,1]
C1513375
UMLS CUI [1,2]
C0556975
UMLS CUI [2,1]
C1514989
UMLS CUI [2,2]
C0556975
minutes per week
Complications of treatment
Beschreibung

Complications of treatment

Alias
UMLS CUI-1
C0087111
UMLS CUI-2
C0009566
Did you experience a medication side effects that resulted in discontinuing your prescribed medication for atrial fibrillation?
Beschreibung

Inclusion Criteria: All patients Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Single answer

Datentyp

integer

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 1 = Dizziness, fainting, lightheadedness or loss of consciousness
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2]
C0012833
UMLS CUI [3]
C0039070
UMLS CUI [4]
C0220870
UMLS CUI [5]
C0041657
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 2 = Erectile dysfunction
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2]
C0242350
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 3 = Hair loss
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2]
C0002170
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 4 = Memory problems, brain fog or poor concentration
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2]
C3843050
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 5 = Mental health issues such as depression or anxiety
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2]
C0003467
UMLS CUI [3]
C0011581
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 6 = Muscle or joint pain
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2]
C0231528
UMLS CUI [3]
C0003862
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 7 = Shortness of breath
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2]
C0013404
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 8 = Stomach problems such as nausea, vomiting or diarrhea
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2]
C0027497
UMLS CUI [3]
C0042963
UMLS CUI [4]
C0011991
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 9 = Unexplained bruising or bleeding
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2,1]
C4288071
UMLS CUI [2,2]
C0009938
UMLS CUI [3,1]
C4288071
UMLS CUI [3,2]
C0019080
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 10 = Unusual weakness or tiredness
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2,1]
C2700116
UMLS CUI [2,2]
C3714552
UMLS CUI [3,1]
C2700116
UMLS CUI [3,2]
C0848717
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 11 = Weight loss
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0392325
UMLS CUI [1,2]
C0332294
UMLS CUI [1,3]
C0457454
UMLS CUI [1,4]
C0013227
UMLS CUI [1,5]
C0004238
UMLS CUI [2]
C1262477
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 12 = Other (specify)
Beschreibung

Inclusion Criteria: If ‘1 = Yes’ to MEDSEDISCONT Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Choose all that apply

Datentyp

boolean

Alias
UMLS CUI [1,1]
C0205394
UMLS CUI [1,2]
C0392325
UMLS CUI [1,3]
C0332294
UMLS CUI [1,4]
C0457454
UMLS CUI [1,5]
C0013227
UMLS CUI [1,6]
C0004238
Other Side effects, specification
Beschreibung

Note: This item does not exist in the original standard set. Fill in for specification if MEDSE_12 is ticked. Inclusion Criteria: If MEDSE_12 is ticked Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Free text

Datentyp

text

Alias
UMLS CUI [1,1]
C0205394
UMLS CUI [1,2]
C0392325
UMLS CUI [1,3]
C0332294
UMLS CUI [1,4]
C0457454
UMLS CUI [1,5]
C0013227
UMLS CUI [1,6]
C0004238
UMLS CUI [1,7]
C2348235
Patient-Reported Outcomes
Beschreibung

Patient-Reported Outcomes

Alias
UMLS CUI-1
C2987124
PROMIS Global Health, total score
Beschreibung

As there is an official distribution site for the questionnaire, only the total score is included in this version of the standard set. In the original standard set there are 10 questions. The OID's are: PROMIS-10_Q01 to PROMIS-10_Q10 Inclusion Criteria: All patients Timing: Baseline, 6-monthly Data Source: Patient-reported Type: Single answer

Datentyp

integer

Alias
UMLS CUI [1,1]
C3836333
UMLS CUI [1,2]
C2964552

Ähnliche Modelle

Follow-up - Patient-reported

Name
Typ
Description | Question | Decode (Coded Value)
Datentyp
Alias
Item Group
Administrative Data
C1320722 (UMLS CUI-1)
Patient ID
Item
Indicate the patient's medical record number
text
C1269815 (UMLS CUI [1])
Time Relative to Baseline
Item
Time Relative to Baseline
text
C0439564 (UMLS CUI [1,1])
C1442488 (UMLS CUI [1,2])
Item Group
Lifestyle interventions measured
C0023676 (UMLS CUI-1)
C0184661 (UMLS CUI-2)
Item
Indicate your (the patient’s) category
integer
C1519386 (UMLS CUI [1,1])
C0683312 (UMLS CUI [1,2])
Code List
Indicate your (the patient’s) category
CL Item
Never (0)
C0425293 (UMLS CUI-1)
(Comment:en)
CL Item
Former (1)
C0337671 (UMLS CUI-1)
(Comment:en)
CL Item
Current (2)
C3241966 (UMLS CUI-1)
(Comment:en)
Item
How many standard alcoholic drinks do you drink per week?
integer
C0560579 (UMLS CUI [1])
Code List
How many standard alcoholic drinks do you drink per week?
CL Item
None (0)
C0549184 (UMLS CUI-1)
(Comment:en)
CL Item
1-6 (1)
C0205447 (UMLS CUI-1)
C0547043 (UMLS CUI-2)
C0205452 (UMLS CUI-3)
(Comment:en)
CL Item
7-14 (2)
C0205453 (UMLS CUI-1)
C0547043 (UMLS CUI-2)
C3715152 (UMLS CUI-3)
(Comment:en)
CL Item
>14 (3)
C0205172 (UMLS CUI-1)
C3715152 (UMLS CUI-2)
(Comment:en)
The Physical Activity Q1
Item
On average, how many days per week do you engage in moderate to strenuous exercise (like a brisk walk, slow biking, general gardening)?
integer
C1513375 (UMLS CUI [1,1])
C0677547 (UMLS CUI [1,2])
C1514989 (UMLS CUI [2,1])
C0677547 (UMLS CUI [2,2])
The Physical Activity Q2
Item
On average, how many minutes do you engage in exercise at this level?
integer
C1513375 (UMLS CUI [1,1])
C0556975 (UMLS CUI [1,2])
C1514989 (UMLS CUI [2,1])
C0556975 (UMLS CUI [2,2])
Item Group
Complications of treatment
C0087111 (UMLS CUI-1)
C0009566 (UMLS CUI-2)
Item
Did you experience a medication side effects that resulted in discontinuing your prescribed medication for atrial fibrillation?
integer
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
Code List
Did you experience a medication side effects that resulted in discontinuing your prescribed medication for atrial fibrillation?
CL Item
No (0)
C1298908 (UMLS CUI-1)
(Comment:en)
CL Item
Yes (1)
C1705108 (UMLS CUI-1)
(Comment:en)
Side effects resulting in discontinuation of AF medication: Dizziness, fainting, lightheadedness or loss of consciousness
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 1 = Dizziness, fainting, lightheadedness or loss of consciousness
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C0012833 (UMLS CUI [2])
C0039070 (UMLS CUI [3])
C0220870 (UMLS CUI [4])
C0041657 (UMLS CUI [5])
Side effects resulting in discontinuation of AF medication: Erectile dysfunction
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 2 = Erectile dysfunction
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C0242350 (UMLS CUI [2])
Side effects resulting in discontinuation of AF medication: Hair loss
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 3 = Hair loss
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C0002170 (UMLS CUI [2])
Side effects resulting in discontinuation of AF medication: Memory problems, brain fog or poor concentration
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 4 = Memory problems, brain fog or poor concentration
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C3843050 (UMLS CUI [2])
Side effects resulting in discontinuation of AF medication: depression or anxiety
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 5 = Mental health issues such as depression or anxiety
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C0003467 (UMLS CUI [2])
C0011581 (UMLS CUI [3])
Side effects resulting in discontinuation of AF medication: Muscle or joint pain
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 6 = Muscle or joint pain
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C0231528 (UMLS CUI [2])
C0003862 (UMLS CUI [3])
Side effects resulting in discontinuation of AF medication: Shortness of breath
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 7 = Shortness of breath
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C0013404 (UMLS CUI [2])
Side effects resulting in discontinuation of AF medication: nausea, vomiting or diarrhea
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 8 = Stomach problems such as nausea, vomiting or diarrhea
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C0027497 (UMLS CUI [2])
C0042963 (UMLS CUI [3])
C0011991 (UMLS CUI [4])
Side effects resulting in discontinuation of AF medication: Unexplained bruising or bleeding
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 9 = Unexplained bruising or bleeding
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C4288071 (UMLS CUI [2,1])
C0009938 (UMLS CUI [2,2])
C4288071 (UMLS CUI [3,1])
C0019080 (UMLS CUI [3,2])
Side effects resulting in discontinuation of AF medication: Unusual weakness or tiredness
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 10 = Unusual weakness or tiredness
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C2700116 (UMLS CUI [2,1])
C3714552 (UMLS CUI [2,2])
C2700116 (UMLS CUI [3,1])
C0848717 (UMLS CUI [3,2])
Side effects resulting in discontinuation of AF medication: Weight loss
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 11 = Weight loss
boolean
C0392325 (UMLS CUI [1,1])
C0332294 (UMLS CUI [1,2])
C0457454 (UMLS CUI [1,3])
C0013227 (UMLS CUI [1,4])
C0004238 (UMLS CUI [1,5])
C1262477 (UMLS CUI [2])
Side effects resulting in discontinuation of AF medication: Other
Item
Which side effects caused discontinuation of your prescribed medication for atrial fibrillation. 12 = Other (specify)
boolean
C0205394 (UMLS CUI [1,1])
C0392325 (UMLS CUI [1,2])
C0332294 (UMLS CUI [1,3])
C0457454 (UMLS CUI [1,4])
C0013227 (UMLS CUI [1,5])
C0004238 (UMLS CUI [1,6])
Other Side effects, specification
Item
Other Side effects, specification
text
C0205394 (UMLS CUI [1,1])
C0392325 (UMLS CUI [1,2])
C0332294 (UMLS CUI [1,3])
C0457454 (UMLS CUI [1,4])
C0013227 (UMLS CUI [1,5])
C0004238 (UMLS CUI [1,6])
C2348235 (UMLS CUI [1,7])
Item Group
Patient-Reported Outcomes
C2987124 (UMLS CUI-1)
PROMIS Global Health, total score
Item
PROMIS Global Health, total score
integer
C3836333 (UMLS CUI [1,1])
C2964552 (UMLS CUI [1,2])

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